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Article about new potential treatment by Victoria Bohne, in Norwegian

JES

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From following this thing over the last year or so, I reckon the main issue was that various technical procedures were not done correctly. Proper research takes time and non-blinded self-reported studies like the ones described in Bohne's patent document are likely of little use in convincing a drug company or getting further financial support.

Having said that, I still think the idea itself is interesting. There were a number of patients that subjectively improved based on the report in the patent document and AFAIK there are patients still receiving this mixture. I actually tested this last summer based on the assumption that the main (active) ingredient in the oxalic acid mixture is spinach. The results were interesting. After few hours from the first dose I felt a huge increase in energy and decrease in brain fog. This improvement lasted for a few more hours, after which I experienced a clear worsening of POTS and CFS symptoms that lasted for another few hours. Over time I became less tolerant to any amount of spinach and had to quit, but the initial effect was interesting enough that it would probably warrant some further studies.

My hypothesis is that oxalic acid somehow affects the microbiome and that consuming oxalate regularly will alter the microbiome in favour of oxalate consuming spieces. If the microbiome and gut is in a really bad state, as I suspect it is for me, this treatment might not help us to rebound but potentially make things worse. Oxalic acid is something that is supposed to be consumed by the microbiome and without a healthy microbiome I hypothesize that you could end up with dangerously high levels of oxalate elsewhere in the body, which could explain reported side effects like temporary blindness.
 

wigglethemouse

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Oxalate has also been used in blood analysis as a platelet binder (possibly making a platelet calcium complex)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1023990/

I don’t know anything else about it’s platelet binding, just what I read in this old paper.

Not sure if that makes sense as another possible mechanism, but the effects (both good and bad) seem like they could be related to circulatory changes too.
 
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Hoping to kick this thread back to life again. Considering the quite extensive info available in the patent application, what are the remaining pieces one would need to know to make this drinkable at home? With no skills in chemistry whatsoever (and suffering from severe brain fog) I'm not able to follow the reasoning at all. I know skilled people have been discussing the mechanisms in this thread and others, but why not try to make an attempt to figure out a close-enough recipe? I'd gladly be my own test guinea pig as long as I would have a list of what ingredients to put in.
 

JES

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Hoping to kick this thread back to life again. Considering the quite extensive info available in the patent application, what are the remaining pieces one would need to know to make this drinkable at home? With no skills in chemistry whatsoever (and suffering from severe brain fog) I'm not able to follow the reasoning at all. I know skilled people have been discussing the mechanisms in this thread and others, but why not try to make an attempt to figure out a close-enough recipe? I'd gladly be my own test guinea pig as long as I would have a list of what ingredients to put in.
I spent some time trying to dig up this information last year. I didn't find any source willing to reveal the exact composition, but the patent document basically stated it was just a mix of fruits, nuts and vegetables. It also became clear that the main ingredient was spinach. They compared spinach with some other oxalate rich fruit and spinach was the one that gave the strongest response. My experience was similar. I didn't notice any impact whatsoever from having rhubarb or strawberries, but spinach leafs even in a small quantity produced let's say interesting effects.

My safest bet is just try eating some fresh spinach, that way it's just an experiment of consuming one type of food that is normally eaten by millions of people, so you don't risk any side effects from a mixture of ingredients.
 
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I spent some time trying to dig up this information last year. I didn't find any source willing to reveal the exact composition, but the patent document basically stated it was just a mix of fruits, nuts and vegetables. It also became clear that the main ingredient was spinach. They compared spinach with some other oxalate rich fruit and spinach was the one that gave the strongest response. My experience was similar. I didn't notice any impact whatsoever from having rhubarb or strawberries, but spinach leafs even in a small quantity produced let's say interesting effects.

My safest bet is just try eating some fresh spinach, that way it's just an experiment of consuming one type of food that is normally eaten by millions of people, so you don't risk any side effects from a mixture of ingredients.
Would you like to specify "interesting effects"? :)

If it's that simple, just consuming oxalates in the form of fresh spinach, wouldn't it have spread? I feel like there must be something more to it, some really important substance together with the spinach and rhubarb.
 

wigglethemouse

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Victoria Bohne posted on Facebook on 3 Feb 2020 that they were raising money for a new publication
https://www.facebook.com/victoria.bohne.9
Donasjon ønskes!

Kjære venner, familie, ME rammede og deres pårørende! Denne ukens diskusjon i VG viser enda en gang at det skal til ny forskning for å forklare denne sykdommen. Øyvind og jeg er godt på vei, men alt tar enormt lang tid, spesielt når en har ikke økonomisk støtte. I disse dager er vi klare med neste vitenskapelig publikasjon som gir forståelse og forklaring på hva PEM er og hva den skyldes. Artikkelen inneholder video, som brukes som bevis på at sykdommen bør være klassifisert som metabolsk lidelse. I denne sammenheng ber vi dere om økonomisk bidrag til publikasjonen. Pengene går til språkvask og illustrasjoner, samt repetisjon av enkelte bevis (blodtest). Det er snak om ca 10 000 nok. Dessverre, har vi ikke råd til å publisere i "Open Access" , da dette krever alt fra 15-25 000 nok (avhengig av tidsskriftet).

Bankinfo finner dere i den første kommentaren til denne posten. Dette er for å gjøre det lettere for de som har lite energi eller tid. Alle bidrag vil være mottatt med stor takk. Forventet publikasjonsdato er medio april 2020. Merk din donasjon med fult navn og ditt navn vil være nevnt i artikkelen.

Tusen hjertelig takk!

Victoria og Øyvind
Translation using Facebook translate tool
Donation is wanted!

Dear friends, family, me affected and their relatives! This week's discussion in VG shows once again that it is going to new research to explain this disease. Øyvind and I are well on the way, but everything takes a huge long time, especially when one does not have financial support. These days we are ready with the next scientific publication that gives understanding and explanation of what the climate policy is and what it is due to. The article contains video, which is used as proof that the disease should be classified as metabolic disorder. In this context, we ask you for financial contribution to the publication. The money goes to clean and illustrations, as well as repetition of some evidence (blood). There is talk about about 10 000 enough. Unfortunately, we can't afford to publish in "open access" as this requires everything from 15-25 000 enough (depending on the journal).

The info will find you in the first comment of this post. This is to make it easier for those who have little energy or time. All contributions will be received with a big thank you. Expected Publikasjonsdato is mid April 2020. Mark your donation with an ugly name and your name will be mentioned in the article.

Thank you so much!

Victoria and øyvind
 
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Imagine this: You accidentally found an effective treatment which can be made in every kitchen. So even the poorest Patients could obtain it. You could help millions of sufferers and save thousands of lives. Not many people have the opportunity to do something THAT good in their life. It’s a gift.

And what is Victoria doing? Put up such a kindergarten-show.
Maybe she wants to make money but doesn’t know how. Producing a sellable product didn’t work. In terms of morality there is only one right thing to do. So please tell us the recipe. It’s not too late to be a good human.
 
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I tried to dig up some information about this and here is how far I’ve come:

  • There are still at least 18 Patients who get the drinkable
  • They pay about 500-600€ per month
  • I know two who get it, Eirik Asknes and Silje Sandtorv
  • The drinkable tastes like berry’s
Silje talks about her experience quite open on her FB-page.

Also Victoria herself answered me on FB. She said that they couldn’t create a drug. They are now working on a Patent and they hope that a company will manufacture the drug.
If this is all true, Victoria is placeing her financial status above the lives of millions and that is wrong and inhuman. Any ideas what i can write back to her?

My hope is, that maybe they do a correct Patent this time, where they actually describe how the drinkable is made. When the drug needs to be developed from scratch, this may take 15 years +.


Meanwhile I’m having one oxalat-smoothie a day, with no success so far :rofl:.
 

JES

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  • There are still at least 18 Patients who get the drinkable
  • They pay about 500-600€ per month
  • I know two who get it, Eirik Asknes and Silje Sandtorv
  • The drinkable tastes like berry’s
500-600€ per month for, according to their patent document, a mixture of fruits, greens, vegetables and nuts. Must be some expensive vegetables...

I'm as confused by the whole thing as a couple of years ago. They already went to one drug manufacturer who denied them. Then they tried to patent this mixture, but it didn't work out either. On top of that, their "trial" wasn't registered properly, so they probably had to start all that again as well.

I still maintain that I got large temporary benefits simply from eating spinach alone. It clearly isn't the only ingredient, but looking at how these things are run, I don't think we are talking about a very scientific procedure to figure out this mixture. It rather sounds like something most of us could trial and error at home.
 

JES

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@sb4 Sure. Big temporary uplift in most symptoms and surge of energy, starting around 30-60 minutes after eating some fresh spinach. First time I tried this I naively thought I was cured. The first letdown came around 4-5 hours later, my POTS and other symptoms came back and actually got slightly worse from baseline. Over time, my tolerance to this treatment got worse and I even developed kidney pain, so wasn't possible to maintain.

Dosage, I'd say around 20-30 grams of spinach was enough. To get the best effect I also had to make sure to not eat anything at the same time, especially not milk or other acid neutralizing products. I tried for fun to take some calcium and magnesium with the spinach and not surprisingly, it lost 90% of its effect, so I basically ruled out it was the oxalic acid and no other ingredient that helped me. Little confusingly, rhubarb didn't seem to work in similar way despite containing oxalic acid, but it could be a matter of concentration or dosage.
 

sb4

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@JES Now that you mention it I do remember. So you think oxalic acid was neutralised when taken with Ca and Mg, but this effect did not occur with rhubarb. Thats an interesting experiment you did. Perhaps it is the oxalic acid combining with something else that is providing benefit, or maybe some other acid. Perhaps the form the oxalate is in allows it to absorb better, I remember something about soluble vs insoluble oxalate. Maybe spinach provides something that increases absorption?
I don't think I will try it as around 6 months ago I had a small kidney stone. At the time I started eating spinach and a few other ingredients that could cause stones.
 
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I still maintain that I got large temporary benefits simply from eating spinach alone. It clearly isn't the only ingredient, but looking at how these things are run, I don't think we are talking about a very scientific procedure to figure out this mixture. It rather sounds like something most of us could trial and error at home.
I agree. That’s probably how Victoria found it out herself.

@4 Sure. Big temporary uplift in most symptoms and surge of energy, starting around 30-60 minutes after eating some fresh spinach. First time I tried this I naively thought I was cured. The first letdown came around 4-5 hours later, my POTS and other symptoms came back and actually got slightly worse from baseline. Over time, my tolerance to this treatment got worse and I even developed kidney pain, so wasn't possible to maintain.

Dosage, I'd say around 20-30 grams of spinach was enough. To get the best effect I also had to make sure to not eat anything at the same time, especially not milk or other acid neutralizing products. I tried for fun to take some calcium and magnesium with the spinach and not surprisingly, it lost 90% of its effect, so I basically ruled out it was the oxalic acid and no other ingredient that helped me. Little confusingly, rhubarb didn't seem to work in similar way despite containing oxalic acid, but it could be a matter of concentration or dosage.
That sounds pretty much like it is described in the patent. Do you remember what kind of spinach you ate? (Are there different kinds? I don’t even know :rofl:)
 

JES

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That sounds pretty much like it is described in the patent. Do you remember what kind of spinach you ate? (Are there different kinds? I don’t even know :rofl:)
There are different types of spinach, yes. It changes with the season as well, where I live it's mostly imported stuff in the winter and domestic in the summer. I didn't find any significant difference in any of them though. One 100 gram pack costs a couple of euro, which is enough for a day assuming a 30 gram three times daily dosage, which might just be frequently enough. If it wasn't for the kidney pain I'd try this again, but I suspect leaky gut or whatever made my body not handle the oxalates properly (I read it's supposed to be degraded by gut bacteria). It's a real double whammy, you find something that helps but cannot tolerate it, but this is often the case with ME/CFS treatments.